We've know now for about 10 months, that my baby has food allergies, it's been 6 months since her first real diagnosis and 4 months since the follow-up tests, which led us to the Epipen Prescription. She's had 3 severe reactions, including one very recently.

My husband was telling me yesterday he was overwhelmed with the Allergy Parenting. Allergies now dominate our thoughts, life, conversations and worries. That's what we always talk about, it seems. Grocery shopping is a real puzzle. Every outing must be planned ahead since we have to bring Anne her own food. Every invitation to friends' houses and parties is a safety concern. Our dreams of vacationing with our little girl are somewhat gone. We worry about Christmas because we will be visiting family for 2 weeks, and food will be everywhere!! We read, we look for information, we talk....

Is that what parenting an allergic child is, or does it get easier as they grow older? I wouldn't change my daughter for anything, but someday, I find myself dreaming of doing things on a whim, allowing grandpa to feed her some cake, go to the restaurant, go to friends houses without looking at floors, think about other things that food, meals and recipes...

Sorry about the long winded post... some days are easier than others, I guess... My husband and I are going through a rough patch after last week's incident...

For us it was hardest in the beginning, not because the things we can or can't do have changed over the years, but because we've gotten used to it. We're used to not going to restaurants, and having to plan every outing oh so carefully. We got used to spending eons in the grocery store reading labels, calling manufacturers, and declining invitations to events that we felt were too risky. And the friends and relatives that we spend time with have all already been through the "allergy education process".

In the beginning we were mourning the loss of spontaneity, security and "normalcy", and each person that we came into contact with had to be educated (and not all of them wanted to be ). It was sad and tiring, and sometimes really hard to give up my vision of what I had dreamed our sons childhoods would be like...but we muddled through.

Now we have long periods where life is just business as usual, my sons are kept safe by the routines we have in place and we don't spend a lot of time thinking about or discussing allergy-related stuff. Then something comes up like a holiday, a new teacher, a birthday party and we go back to the heavy duty thinking, planning, checking and double checking to keep them safe in the new situation. There will always be times when the fact that 'allergies really suck!!!' raises its ugly head with particular vehemence (right now my sons want a dog so badly they can hardly stand it, and it's sad watching them longing for something that most other kids have but is impossible for them to), but for the most part life goes on steadily and happily, without being dominated by the allergy monster.

Hang in there...it will get better.

_________________1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema

Kdufour-how old is your child and what are the allergies? I am sure that we can help you to problem solve around some of these issues.

The first year is the hardest because you are learning so much, what you can't eat, what you can eat, what you need to worry about and how to manage those worries. On top of this you are concidered an expert when you really are not feeling very expert and you feel that your childs life dangles by a thread.

If your child is a toddler or pre-school age, they put everything in their mouths and lack the judgement or self-dicipline to refuse foods that can be unsafe. If they are in school, they may already like those foods and they will have to mourn their loss, come to terms with thier new life and we worry about their self-esteem.

It gets better! Once you have several recipes under your belt and have some basic safe foods (which you will still have to read lables for) you can relax. As your child gets older and understands what the rules are in terms safety, you can relax. After you have been through the holidays, birthday parties etc you will have a plan on what to expect and how to procede next time.

You will start to see that people start to accommodate your child in little ways that warm your heart.

Regarding all conversations leading to food allergies, this is unhealthy. You will have to make a concious effort not to let this be the biggest part of your relationship. Break up the job of researching recipes and safe foods and have each partner take on a part. I devise recipes and my husband does the shopping because he can do it by himself and concentrate on the labels. Maybe put some time aside to discuss how you will manage a trip or event, come up with a plan and then move on.

Kim,
Yes, the first year is hard. It does get easier and you learn how to organize your life differently. Look for silver linings and there will be many. You are mourning your old life but you will find that in some ways your life will improve. We eat homemade meals as a family every night. Not many families do that. No junk food or processed food for us. My children have homemade Christmas cookies. Focus on what you can do and not what you can't. It may be hard to attend potlucks and meals over the holidays but there are other options. Bring your daughter's meal and her own toys. Wash her toys when you return home. Come after the meal and enjoy the company. Bring wipes everywhere you go. Insist on handwashing after everyone finishes the food. We find it easier to be the host for events and to provide the food. Or you could invite everyone for a nonfood event like caroling or a games night. You can have a life with food allergies. Hang in there.

I always have small portions of cooked meat (sliced turkey, ham or chicken), cupcakes, and veggies in the freezer for occasions when we go out. That way I can throw together a meal for my daughter without a lot of prep.

One important thing we have learned is to not worry about issues too far down the road. I saw in another posting that you are looking into school laws. Yes, that is important but your child is a baby right now. Give yourself some time to adjust to the diagnosis and then move on to the next concern. Sometimes I worry about her teenage years and then how she will manage in university but then I tell myself that I'll deal with that then not now.

Hang in there.
Kate

_________________13 year old daughter -- lives with life-threatening allergies to milk, tree nuts and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema10 year old son - no allergies

If you are going to a small pot luck, bring a main course -one that she can eat. Make sure that you take the first serving before it becomes contaminated and then let it be eaten by others.
That and a few special treats for her and she'll be happy.
Do speak to her and teach her not to eat foods that are just for show. Do this in the same manner that you would tell her that the stove is not for touching as it could be hot. Children are capable of grasping many concepts even when they can't say much.

I have days/weeks like that too. I get frustrated when it seems other families are able to enjoy and look forward to social outings and we find them stressful and more work ( baking so she can have a treat, getting a meal together etc.). I feel like I'm the only person in my social circle who doesn't have a babysitter to enjoy a night out or who can't leave their child at a friend's to play. Then the other day my daughter asked " why did you want a little girl with a nut allergy?" and I realized how fabulous she is and how the allergy is just a little thing to which we have to adapt. I wouldn't trade her and all that she is for anything ( who else would read the ingredients on the fish food every morning to check for nuts? )

who else would read the ingredients on the fish food every morning to check for nuts?

I find that our children and their friends are so full of compassion for others that it makes my heart swell (like the Grinch's). I like to think that the rise in food allergies is not such a bad thing if all of these kids grow up to be as caring and responsible as they seem right now...maybe society has a chance.

Jack was diagnosed just over a year ago when he was 13 months old. I wanted to say that life has gotten easier for me since then. My husband still finds it difficult but he's not as attuned to the kids as I am.

I try to look at the positives, we eat healthier meals and are more conscious of the snacks we have in the house. Travelling is still a concern but I've taken to packing all the foods I think Jack will need and am no longer shy about sending a list of foods our hosts can purchase ahead of time.

I think because we found out about his allergies when he was young it has made it easier to explain to him and his brothers. It gives me hope that Jack will be very aware of his special food needs as he gets older and ventures away from me more.

It has become my motto. I use it when I do presentations to schools or principals or daycare. I find that it applies to us in so many ways if you substitute disability with food allergies. It is such a powerful way of explaining what it's been like to live with a food allergy diagnosis.

I too wouldn't change my boys for anything in the whole world. They are worth every second and every minute that we spend keeping them safe. I find that I've made a point of cherishing every moment, every instant. And Holland really is beautiful if you take the time to enjoy it!!

Silver linings are what it's all about and it does get easier, the kids get older and understand better, you get more knowlegeable and gain better understanding and as you evolve through it all, you really do get to enjoy what it is that your life is offering you. It's just different than what you expected.

Thanks Denise for that story... I'd read it before and found it beautiful, but I was thinking allergies are not "as bad" as other disabilities, so I was ashamed of using that metaphore for myself.

After reading all your responses, I've tried in the past few days not to let allergies define my life and our conversations, and it's so much easier! I know some days will be harder than others, but I have to learn to enjoy new things not food related, and my daughter is such a joy, I owe it to her that she lives a full, healthy and happy life, with happy parents!!!

I think it makes perfectly logical sense that for a period of time after diagnoses, allergies do rule your every waking moment.

When someone is planning a wedding -- it's all they can think about. Everywhere they look is something to do with *the big day*.

Having a baby and there is NOTHING else on your mind. And, that continues after the baby is born too. You start by bringing a safe (clean) area for the baby. But then, she starts to crawl around, so you decide, do I bring the playpen? Or is this person's home clean enough? stairs -- can she fall down the stairs? is all the lego picked up there? any other little toys an older child might leave out at that home? And, you decide how much space to allow your child in each home.

Now, it's allergies. Of course it's always on your mind. And, everywhere you go, has to be looked at a little more closely. But, in time, there will be some places you'll know you can't let your guard down for a second -- and others that you'll know the families there will help to keep her safe.

It WILL get easier. and thoughts of it will eventually be like everything else -- you think about it full force some days, and barely notice it others.

_________________self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

It has been almost 2 years since we first found out about my son's allergy...to say it gets "easier" or "better", hmmm I am honestly not sure. I guess it depends on what your definition of those are. For me, I think it just gets "different". You have a new or different way of approaching life, especially when encountering new scenarios. You have to totally rethink every aspect of your life in order to keep your child safe. And yes, at times it does get exhausting that everything needs to be planned out. I too some days feel like I wish we could just go to a social outing on a whim like so many other families, because it can get "tiring" to have to call, question and prepare always ahead of time. But I am of the school of thought that everything happens for a reason and so far I have seen some reasons in my boys. I am proud of my son who at the age of 4 1/2 has become so articulate in explaining his belt and medic alert bracelet, question adults about the food they offer him, and remind me (although HE doesn't know I don't need reminding!) to "check the label if it is nut free." I am also amazed at his 3 yr old brother who also reminds everyone we only eat nut free food and asks if it is nut free even though he is not allergic himself. Yes, one does mourn the loss of what could have been for his future thinking about trips to exotic places, trying new foods or restaurants, and those types of things. And I still get in a "funk" every once in awhile (like getting choked up and teary eyed this summer as I saw him watch the ice cream truck drive by and stop for the other kids, knowing he will never have one) But then I think about the big picture, and how lucky I am to have these wonderful boys in my life and the joy they bring me each and every day.
So...for me, gone are the early days of standing in the grocery store aisles and crying as I read labels of foods we used to eat, only to put them back on the shelves (thank goodness for 24 hrs grocery stores so no one saw me in the wee hrs!) But I know there are still many "firsts" I will encounter that are "different" from when I first found out. I guess now I am just more equipped (educated) to handle them, as it is a learning experience for us too.
Ang

_________________13 year old son - anaphylactic to TN/PN, allergic to dust and moulds11 year old son - no allergies7 year old son - no allergies

like getting choked up and teary eyed this summer as I saw him watch the ice cream truck drive by and stop for the other kids, knowing he will never have one

I still get misty at this, or during the Santa Claus Parade when people would hand her candy canes and she would hand them to me without hesitation, or when I go to events allergy events and see the huge effort that we all put out to try and keep our children safe both physically and in terms of their self-esteem...
[/list]

i think the first four years were horrible, the constent reactions,
the first years trying to get proper medical help,
getting it, and organising the other childrens care,
the expense of traveling so far for appointments.
The first list of allergies from first testing. looking at the long, long list, and wondering how on earth are we going to keep him alive?

educating the medical profesionals around us as we learnt all about allergies.
from the Gp, health visitor, nurses , then teachers. from pre-school, nursery , to full time school, the amount of people who have to be prepared.

On reflection, the hardest point was accepting that this was going to stay, when our son was 7 allergy doc told us point blank the list of allergies that he WASNT going to go out of ever. THAT WAS REALLY HARD> outgrowing became a huge focus for us.
once we knew it was life long, then our approach to brining him up changed. our focus was preparation for suriviving despite his allergies. what we could teach him , so that he could save his own life.

This is our ongoing battle, the hidden stress, we keep from him, and our positive face one what he can do to keep himself safe.

when he was younger I was in total control of his life, now he is 11 and those days are drifting away. As they should, so that he can be a normal boy.
Normal is refusing food, never eating the fun things others do, he has never known anything else.
He wishes it was different, but accepts that his greater need is to avoid having a reaction. Esp as he can remember quite clearly his last big reactions.

in conclusion, I have to add that it never gets better, the goal posts just keep on moving.

Who is online

Users browsing this forum: No registered users and 2 guests

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum